A Trisomy 18 Angel
August “Auggie” Mark Ellis was born sleeping on 12/21/2020. Weighing 1 lb 4.1 oz and was 12.5 inches long. At a routine ultrasound around 19 weeks, a few possible minor physical anomalies were found. These were club feet and a 2-vessel umbilical cord (instead of 3). Because of these findings, it was suggested that I have additional lab work done, and I was referred to a perinatologist to have a level one ultrasound performed. A week or so later, we met with our specialist and received a devastating clinical presentation. Auggie had severe anomalies related to his brain (microcephaly), heart (PDA, PFO, ASD, and VSD), dilated kidneys, a diaphragmatic hernia, a severe neural tube defect of the sacral spine, a large gastroschisis, postured hands and feet, as well as a cleft lip and palate. Beyond that, he had no end-diastolic flow. My lab results also showed an increased risk for Trisomy 18. Following this clinical presentation, we were scheduled for an amnio, which confirmed our T18 diagnosis. We were given a max of 4 weeks with him at this point, so we did our best to make the best possible month.
We did a gender reveal, had a baby shower, visited grandparents and great-grandparents from out of state, put up our Christmas tree, had Christmas early, and made cookies. Really, anything we could do to make memories with our sweet boy. August survived for another 12 weeks after we were told 4.
It was a Thursday night, and I was working (nights as a NICU RN). We had an ultrasound appointment at 8:00am after getting off work at 7:30 on Friday morning. The last time I felt Auggie move was about 4am. I was bottle feeding a former micropreemie (he hated when I held other babies and was kicking her 😅), but at our 8:00am appointment, he no longer had a heartbeat.
We chose to spend the weekend with him and our families, and we’re admitted for an induction on Sunday night. He was born at noon exactly on 12/21/2020 at 32 weeks, weighing 1lb 4.1 ounces, and was pure perfection.
Auggie has made a profound impact on our family, our friends, and acquaintances as we continue to share his story. We were able to donate 100 books in his name to the children’s hospital where he was born and where I work, for families in the NICU, PICU, and general pediatrics. His story has inspired multiple people to reach out to my husband and me, who went through the loss of a child due to a variety of reasons, whether privately or publicly, to talk, share their own stories, and heal.
He has made me a better NICU nurse and helped me to connect with the families that I care for in a much more personal way. But most of all, he taught us how to love unconditionally, as much as we can, for as long as we can. He completely changed our perspective on life.
Since his passing, we have had his beautiful little rainbow sister, whom he blessed us with almost exactly one year after his birth. Our sweet Christmas gift, Waverly Augusta, was born postdates on 12/25/2021. He continues to be her most precious Guardian Angel.
The things that remind us of Auggie are elephants (his nursery theme), white roses (placed on our hospital door the day he was born), butterflies (him coming to visit us in the spring and summer), and rainbows (the beautiful Christmas gift he gave us in his sister). We imagined that his favorite color would have been a steely grey or a blue like his stuffed elephant. The verse we have associated with him (which came up several times while I was pregnant with him) is Jeremiah 29:11.
